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Written evidence from Parental Submission 184

 

 

Assessment of and support for children and young people with SEND

 

  1. - It’s been a nightmare. While struggling through juniors, my 99.7% ‘gifted’ range IQ child was diagnosed at our local child development centre with ‘significant and severe’ Dyspraxia (movement skills 2%). Social communication issues were also flagged up and the locum consultant paediatrician said ‘I have no doubt if you walked through that door to the psychologist your child would walk away from here with a high functioning ASD diagnosis but as [they are] very bright I suggest you go away and think about it and come back if there are any problems.’

 

  1. Little did we know that 2.5 years later our child would be incapable of attending secondary school because [their] needs had not been assessed and were certainly not being met! And that we would have such a nightmare getting this done. In retrospect an EHCP should have been sorted there and then before the horrors of Secondary school. But no one suggested that, not the senco or paediatrician or anyone. We were merely given an array of websites or apps to look at to help with our child’s difficulties and no real help.

 

  1. My child entered the wholly inappropriate environment of a mainstream school which trumpeted its SEND grade 1 Ofsted credentials but turned out to be staffed by shouty, SEN ignoramuses who called my bright but bewildered, exhausted and highly stressed child who cannot write, ‘lazy’ and insisted on ‘sanctions’ for problems caused by [their] SEN such as issues with uniform, losing things and [their] social communication.

 

  1. Meanwhile I have been under threat of fining and prosecution because of [their] low attendance for over a year and have also been bamboozled and bullied on a regular basis by the school Sen team and education welfare officer about attendance- nothing about an EHCP. After a year of this I decided to apply without their support. They didn’t like that. It’s insane.

 

 

The transition from statements of special educational needs and Learning Disability Assessments to Education, Health and Care Plans

 

  1. NA

 

 

The level and distribution of funding for SEND provision –

 

  1. Stop saying there’s no money and tax Amazon and their ilk properly. Stop passing the buck on to disabled children.

 

 

The roles of and co-operation between education, health and social care sectors –

 

  1. In some ways they’re in bed with each other. Eg Despite the fact our [child] should have been getting the help [they] needed for [their] existing conditions, we felt under huge pressure from the school to get an Autism diagnosis, otherwise [they] would’ve been shunted down the Camhs route, which from the experiences of friends with super bright high func ASC kids, seemed to be inept and pointless and whose methods were not geared up for those with autistic traits.

 

  1. So we went back, as previously advised, to our NHS Child Development Centre for an ASC assessment with the Community Consultant paediatrician and an ‘Autism Advisor’. Not even sure if this is even a bona fide role within a proper ASC assessment but anyway ... My [child’s] clear sensory and social communication issues were pronounced ‘not enough’ for an Autism diagnosis and we walked away with nothing. But then it turned out this NHS paed was also our Local Authority’s Designated Medical Officer and the NHS ASD Advisor was the LA’s Sen Consultant. They both sat on LA panels which went against agreeing to assess for EHCP for my [child] and one that led to refusal for funding for home tuition despire [them] being unable to attend for a year due to anxiety about school making [them] physically ill. Conflict of interest much? Can I believe their NHS ASC assessment is really true and honest when I know they are also sitting on LA panels who are concerned with budgets. No! This is disgusting!

 

 

Provision for 19-25-year olds including support for independent living; transition to adult services; and access to education, apprenticeships and work

 

  1. It’d better improve by the time my [child’s] 19!

 

  1. I am now drowning in the nightmare of trying to get an EHCP! It’s felt like being sent to a gulag for torture and brainwashing with only the faint tappings from other inmates sending out vital information via Facebook groups such as EHCP experiences England, Not Fine In School, EHCP support Group and Educational Equality. 

 

  1. Sen legal charities advice lines such as Ipsea and SOSSEN are always booked. Lawyers are £200 per hour. I read about parents having their children taken away because their children mask their autism / autistic traits and so the school disbelieves the parent’s claims that their child is suffering and needs further help. https://www.specialneedsjungle.com/social-care-tactics-send-problem-parents/ I try to learn from other parent’s trip-ups with their local authorities and social services, the EHCPs that have to be done again after 6 months because evidence from professionals was delayed, parents going bankrupt after spending £70,000 on getting an ehcp and a placement in independent specialist school - the only place for a high functioning, academically able or gifted SEN child as the local authority’s maintained specialist schools tend to be a one size fits all for more challenged, less academically able Sen kids. Parents are never told about these schools for bright kids with specific learning disabilities as opposed to severe challenges and you have to find out for yourself.

 

  1. Late into last night and today, as well as trying to manage my child, and my ever more problematic financial issues, I was researching into why our recent LA Speech and Language therapist’s and Occupation therapist’s EHCP assessments seemed so strangely pointless. The SALT pronounced my child ‘dyslexic’ after some rudimentary tests when [their] main issue is already known to be severe dyspraxia. 

 

  1. Upon research I realise that despite me giving them evidence backed information about my child’s already recognised autistic traits and significant problems with dyspraxia, they failed somehow to use important subtests and autistic-related testing to investigate these concerns and will therefore not be providing useful and potentially expensive recommendations. The La SALT was using tests that could be passed easily by anyone over 5 years of age. My child is well over that age.

 

  1. So when I do flag this up to the LA, it may put me at risk of FII accusations at worst (as happens to a growing number of  SEN parents -  see the campaign group FIIGHTBACK). Or at the very least, this conscious ineptitude by LA professionals, leant on to save money (see [redacted]) will delay my EHCP further.

 

  1. I applied for the EHCP in [date]. If we manage to get to sendist Tribunal (expensive and stressful with trip to courts in London - not all Sen Parents live in London BTW!) by [date], and finished by [date], my child will have been out of school for [number] months. 

 

  1. It is all highly traumatic for parents. I fully expect a knock at the door by social services any time, perhaps to answer to ‘concerns about why I am asking for so many tests’ as experienced by other parents. Or just to intimidate me. 

 

  1. We have had LA panels work against us and then it’s later transpired that those on the panel have been NHS staff who have had previous knowledge of my child, and who therefore should have stepped down from the panel discussing educational outcomes for my child because of the conflict of interest ie the LA saving money and the NHS supposedly giving an independent an honest assessment of my child’s condition.

 

  1. This situation is abusive. There needs to be accountability from schools, the LA, Social Services, NHS staff and professionals all the way down the line. Instead the buck is passed on to the Sen child and their parents.

 

  1. Thanks for reading.

 

 

May 2019